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My husband Chris was diagnosed with Alzheimer’s in 2019 after at least four years showing signs of memory and cognitive loss, aged 56. He was an investment banker and probably the most intelligent person I’ve ever met. I care for him full time as well as looking after our grandsons 1 or 2 days a week. They bring us so much joy. Our 4 children are devastated by the loss of the father they knew but ran the London marathon this year raising over £25k for the Alzheimer’s Society. We have participated in at least seven pieces of research including a clinical trial but Chris’s symptoms are now too severe for further research. We continue to soldier on day by day. We’re both 61 now and physically fit but our lifestyle is one of just getting through each day. I have no help and there’s such a difference between Young onset dementia compared with the impact dementia probably has in old age. Chris is not often unhappy and nor am I, but I just can’t see an end to it. I can’t leave him on his own because he needs someone around to reassure him and help him with the simplest things but he doesn’t know I’m his wife any more, despite being married for 36 years. There isn’t anything he wants to do except find a job again, (which he could never do) so we just go about our lives, me doing what I have to do, with my doting shadow following my every step.

I was first told 12 years ago, that after a few tests ,they thought I had vascular dementia, and I would be called back in a year , I think it was , many trips to the Dr over the years , I was finally told in January this year 2024 , that yes I had vascular dementia, How did I feel , actually gutted, and to be honest alone and afraid. Eight months later I still feel the same.

Dementia stole my glamourous rebel of a grandma from me. I was travelling the States with my Grandma when I first noticed. Out of her normal routine, suddenly the reality of her memory became clear. I rang my mum in tears. My Grandma and I had been planning our world tour together since I was young. I was scared. I had seen what dementia could do - both my grandma's parents had suffered from it. The dementia slowly imparted itself into my Grandma, chaning how she could relate and interact with the world beyond her mind. What I wish people understood, is that the person is still there behind the cognitive decline. 11 years post diagnosis, my grandma was now in nursing care. She was still as determined as ever (a handful for the staff) but my mother could no longer provide the level of care my grandma needed. I remember at this point telling my grandma that I was sorry I hadn't visited for a couple of weeks, but I had had surgery so couldn't come over. She communicated non-verbally her worry instantly. The lucidity came and went, but my grandma was still there.
What needs to change:
- Support is a postcode lottery. It is VERY patchy and location dependent. A lot of reliance on charities. Even the local authority support is variable and there does not appear to be continuity if you move between areas.
- Support for families who want to look after someone with dementia at home (my mum had zero support for the 5+ years she was caring full time)
- Recognition and resourcing across the care sector that dementia patients are still individuals; listen to the families. Support the person to enjoy the cappuccino in a cermaic mug , rather than tea in a plastic beaker.
- Care sector resourcing - my grandma lived in a home with a beautiful garden but she was rarely allowed to go outside (except when we took her). Resource for activities, social integration, exercise. These essentials were few and far between,
- Investment in the care sector - these institutions become people's homes and yet they can feel so unwelcoming, cold, more like a prison. They should be places everyone wants to spend time, not a last resort.
- Social acceptance for those with dementia; we would take Grandma out for meals coffee etc when her dementia was moderate / advanced
- Address common practices of sedative medicication to make dementia patients 'easier'. My grandma was given medication without our consent for several weeks in her first care home. She lost the ability to speak and it never returned.
- I miss my grandma every day

My mum was diagnosed in Jan 2020, the disease took hold of her quickly and by Jan 2022 we made the difficult decision to put her into care. Sadly, she passed away recently, 24th august 2024.
Although we ‘lost’ mum years ago, it has still knocked us for six. Poor mum’s CHC appeals have been rejected about 3 times and she has never been a drain on society, always worked and paid her taxes, and the time when she needed it most, the adult social care system has failed her and my father. I wish for the Government to see the human beings behind the illness and the god awful statin it puts on families. Imagine living in a state of grief for years and years, but your most precious person is still actually here in body. You lose faith and hope in the systems that are supposed to support you in your hour of need.

My mum has early onset dementia. She’s 60 next year, but was diagnosed shortly after covid. It’s been really hard for everyone, especially her husband. She doesn’t really know who I am which makes me sad, but there are moments such as when we sang ‘dancing queen’ and ‘slipping through my fingers’ together. They are our songs, and she grabbed my hands for a short moment. There needs to be more conversation surrounding dementia, particularly early onset I feel. I’ve always been close to my mum, so all this is so hard to deal with 😢